Saturday, April 23, 2011

To quote Rapunzel in the movie Tangled, according to Bella, It was the best day...ever! She took the center stage readily and soon became a guest of honor diva style. I was so happy to finally be able to give her her own party and the theme was too much fun. I've found that whimsical is a good substitute for perfection, rarely do things turn out as planned- but they do turn out. I was really looking forward to the lanterns and they were a bit of a challenge , but so beautiful once they took flight. In true Bella style- she stood around licking herself while we tried to get the lanterns lit. I wasn't sure if she was pre-emptively taking anti fire measures or if she found some left-over frosting. We can truly say that we risked life and limb for her on this one and this successfully concludes Mallory Girl Birthday Season.

Friday, April 15, 2011

I spent the past couple of days dealing with run of the mill mommy problems- puking, school issues, sports issues, work issues- general life issues. On top of that we throw in a few doctor's appointments, a diabetes education meeting at the school and trying to get ready for Bella's Birthday. For 4 birthdays now- she has been added on to someone else's party or skimped due to medical ailments . I was determined this year that SHE has a party. So far that's going swimmingly. Other than provideng me with a creative outlet for art therapy projects- it's not quite coming together. Yesterday, I took a sick day- for whatever bug Phillip had- was kind enough to visit me- fortunately in a milder form. Mommy sick days are like being essential personnel in an emergency- not a whole lot changes. The biggest change perhaps is that I forced myself to sit and work on some of my project ideas for Bella's birthday- invitations, decorations, that kind of thing. I also took a few extra minutes to catch up on news.

You can imagine my dismay and horror when I stumbled on a story about a 7 year old girl who had plastic surgery on her ears to ward off bullies. Monkey say whaaaaaat???? The mother defended her actions saying it was for her daughter's self esteem and to ward off school bullies. Fail. The doctor who performed the surgery stated that children with these "abnormalities" were likely to suffer from self esteem issues. Fail. Yeah get ready, I've brought my soap box.

No. Plain and simple. She is 7. Her mother has failed her. Do I think the actual act of a kid's ears being pinned back is atrocious? No. You do what you gotta do. If you are emotionally inept and unable to teach your child how to deal the cards they were given and you have the means to fix it- go on with your bad self. Not all cards have to be played. Clearly you can trade cards in now much earlier than before. Ears being pinned is not an uncommon thing. It is a relatively minor procedure in the grand scheme of things.

That little girl had ginormous cup ears. But guess what? She also had hair that covered them. She also has the potential to do anything she puts her mind to. Imagine if she had been a boy. Believe it or not there are still schools and establishments that require certain genders to have appropriately groomed hair. Perhaps why greater than 50% of these surgeries are performed on boys. The girl was asked if she was bullied and she said no. The doctor said such kids repeatedly get called child "Dumbo" and "Mouse Ears". My children call each other Dumbo all the time and I assure you it has no reference to ear size- it is in reference to acts of stupidity or carelessness. Perhaps I need to lobotomize my children? That seems counterproductive. As for Mouse Ears- People pay a lot of money to get those at Disney. The mother states "children are mean" but that the rudest comments come from adults. No kidding. Because those adults were children once and had self serving parents who neither took the time nor effort to appropriate their words or behavior. The kind of adult who was taught as a child that appearances matter more than character- that the volume of your voice was of greater importance than the words it carries, that the best defense is a good offense and to always look out for #1. The same messages Ms. Shaw is teaching her 7 year old. I have no problem that she had her ears pinned, I have a problem that she champions it as a national cause, offering her child up to be the poster child for anti bullying measures. By this logic, differences are the problem- not bullying. I am all about preventative measures. How about telling your child they are perfect in your eyes. That they are worth more than the size of their ears. That anyone who belittles them or makes them feel less than they are worth is not worth their time. That they can deal with adversity and rise above it. That other people's behavior is out of their control, that they are in control of their self image. That everyone has something different and sometimes through these differences we are set apart because we grow from it. Ms. Shaw said she would do anything to keep her daughter from being bullied- which means she has not taught her daughter how to handle the situation if it presents itself. She has shown her daughter that there was something wrong with her that needed to be "fixed". By this logic, if we could get all those other kids contacts, institute some sort of mandatory diet plan, stunt the growth of the too tall, then supplement it for the too short, feed the thin, under develop the over developed and over develop the under, teach lefties to use their righties, teach kids to be better at sports, help kids learn better, dress kids better, and bathe kids better we might actually make a dent in this bullying problem. Fail.

Wednesday, April 13, 2011

We were told repeatedly to watch out for certain signs of low blood sugar and ketoacidosis. Low blood sugar is very dangerous because the brain isn't getting sugar which it needs to run your body and you could die. Ketoacidosis is caused by really high blood sugars and if left untreated the entire system becomes toxic, you could die. Allrighty then. You must maintain a careful balance of sugars in a constantly changing system. To do this, you inject insulin to match food intake. But you have to be careful to consider current blood glucose levels, activity that you will or have participated in as well as like 12 other things like stress, sickness, etc that could change the dynamic. We are 2 weeks into this and the initial shock is wearing off and we are adjusting to the schedule.

As a near and dear friend reminded me- it wasn't so long ago we were entirely overwhelmed by Lily's series of medicines- now that's second nature. It will all normalize. It will. And for awhile- which is to say approximately 3.7 minutes on Monday, I thought there might be a chance that this week would be the week it would normalize. It is not. We went from trying to get high sugars down, to getting low sugars up. Hence the whole balance concept- but sheesh. Phillip was fairly perky about the low blood sugar thing- if you discount the shaky, pale, confused disorientation. Mostly he was game to eat all the high sugar things he could without having to stick himself with a needle. The downside is that his fingers have more pokes than a pin cushion from all the glucose monitoring. Monday night his sugar level did not want to stay above 80, and it is supposed to. Every 10-20 minutes he was complaining of shakiness and looked pale. 2 juices later, we went to jellybeans. Then a granola bar. Then a peanut butter and jelly sandwich. I told him if that didn't do the trick I was going to get him a happy meal and a shake. I saw him secretly praying to blood glucose gods to hold out just a little bit longer- but they- like me were ready for bed. His level got in normal range. I tossed and turned until it was time to check him- wondering if he was dropping and what this meant. Were we in the fabled 'honeymoon" period where the pancreas temporarily works for a little bit before it quits for good? Was he getting sick? Were his doses too high? Was it the exercise? Did he inject insulin into a muscle by accident? I finally just got up and went to check his levels. He was still normal. Ok- at least I can get a couple hours of sleep. Until I hear him in the bathroom. Uh oh. Must be all the juice. May need to rethink serial juice boxes in the future.

Tuesday morning he doesn't look good. He doesn't want to eat after he already had his insulin. I check his ketones, normal. Blood sugar, normal- but will drop with the insulin he took. We switch to tea with honey to cover for the breakfast he doesn't feel up to eating. He spends most of the day on the couch and by afternoon he is better. Then he wakes me last night with severe stomach pains. He is obviously miserable, I wonder if I should take him in or wait it out. He already has an appointment for tomorrow- well I guess it's today- this afternoon. All his levels are normal. We can wait and see. I try a cracker to see if it helps settle his stomach. It does not. We are camped out on the couch- he is feeling horrible and I feel horrible there is nothing I can do. He moans he hates it and it isn't fair. I have to agree. I wish I could take it away, but all I can do it rub his back as he twists and turns. By 3 am he is throwing up. I hope this relieves some of the pain and he can sleep for awhile. It does. I check his levels, still normal. I try to go to sleep, but am lost in worry. A new learning curve, a new set of parameters. Can someone who doesn't have a pancreas left, get pancreatitis? Is this what it's going to be like for every illness? If this is the case, I'm going to need a case- of sedatives. Is it just an average bug? Only time will tell. Maybe next week will be the week. (For the sedatives).

Friday, April 8, 2011

I have no idea if we will get paid or not this upcoming pay period. I wish I had the energy to get worked up about it. But the fact of the matter is we have done this act a half a dozen times since joining the Hawaii Guard 6 years ago. My husband was on 2 year orders, which meant every 2 years (3 times) he had to renew his orders which meant there may or may not be a gap in the pay cycles depending on whether or not the chain of powers that be put their signature, entered data or generally paid attention before the due date. Sometimes it happened, sometimes it didn't. Each time we felt considerable stress- waiting to see if we would have to pay the mortgage and float the rest of the bills. We knew we would get paid, eventually. There are many families out there who are facing loss of hours, or jobs- for them there will be no reimbursement.

When Phil went to train in Florida, same routine- he became part of a different pay pot=lots of paperwork and uncertainty. Same thing on the return trip. Fortunately, it all worked out. Many times people enlist and stay in the military for this coveted ideal called job security. I have heard the snide comment more than once during this recession- about how it must be nice to know where your pay check was coming from. I know exactly where it comes from. It comes from your tax dollars as ciphoned out by congress and signed off on by the president. The tax dollars many would like to put back in their pocket so they could reinvest in society, strengthening our economy. Tax dollars that also go into the pockets of congressmen who seem to have lost sight of their real purpose. Perhaps we should consider letting Starbucks run the government. Because the ridiculous expenditures in the military are legislated, not mandated by those who are forced to serve under a bureaucracy of mismanagement.

Let's face it, war does not pay. At least not the right people. Millions of dollars are added to paychecks in a field ripe with benefits. I am amazed everyone doesn't want to join the military- it is so lucrative. GO ahead let the sarcasm wash over you. You get commissary benefits- which means food at a cost that is about 30-50% lower than the local grocery stores. You get "free" medical care. You get all kinds of travel and special discounts. These benefits were alloted because soldiers found their civilian counterparts made 30-50% more than they did annually. When you are deployed, you get additional "benefits" such as separation pay and hazardous duty pay. You get free transportation to some of the deadliest places in the world. You get to carry a gun. And get shot at. All you have to do is sign your life away. Sounds like a bargain to me.

On average- a congressman makes $170K a year. He/she is expected to work 130-190 days. They average about 140. Less than half a year. Mind you that representatives do not permanently reside in DC- that they have homes in the state they represent. Their trips home are subsidized, many times on private jets. Their families generally live in the state they represent. So theoretically they are spending 140 days a year away from their families.

On average- I couldn't tell you what a soldier/airman/seamen makes. It depends on their education and job,as well as time in service. Military members are very much a cross section of society. Income can range from $30K to well over $200K. The days they spend away from home vary. Many are gone over 340. Sometimes it's only a couple of weeks. Depending on their job, they may or may not have to pay for their own airfare to see their family in their own state of residence. Sometimes their trips home are subsidized on loud cargo jets that may or may not leave on schedule, may or may not break down due to lack of parts from budget cuts and may or may not divert on the way home.

The average American has felt the recession for years and in 2006 the average american income was $46,000. They may or may not have a job due to cutbacks. They may or may not have taken a pay cut in the past few years, many who have are just grateful to have some sort of paycheck. They generally live with their families and will travel for work if necessary. They do try to pay for healthcare, which is usually out of pocket. They eat at McDonald's because sometimes it's cheaper than the manpower hours used to make a homemade hamburger and that proverbial slice of apple pie. That is capitalism.

On average Americans are dissatisfied with the way the government is being run. Conscientous citizens vote and write their legislators , yet rarely receive responses. So are you telling me in the 200 and some odd days representatives are not in session- they are unable to return mail or is there so much of it that they can not possible respond to it all? If they are not reading mail- in what other ways are they in touch with their constituents? Perhaps we should start electing officials by Facebook poll-or perhaps on Twitter. Is that where we will find them? If so, they must be privvy to the bevvy of unhappiness being thrown their way. Perhaps we should make both military and government service mandatory. Then the common man and woman could get a feel for how tough it apparently is to spend other people's money. Perhaps it's time to level the playing field- and remember what is worth fighting for- what brought us here-and what can happen ultimately when 2 sides with 2 varying views cannot find a way to compromise and resolve.

"The world will little note, nor long remember what we say here, but it can never forget what they did here. It is for us the living, rather, to be dedicated here to the unfinished work which they who fought here have thus far so nobly advanced. It is rather for us to be here dedicated to the great task remaining before us—that from these honored dead we take increased devotion to that cause for which they gave the last full measure of devotion—that we here highly resolve that these dead shall not have died in vain—that this nation, under God, shall have a new birth of freedom—and that government of the people, by the people, for the people, shall not perish from the earth." President Lincoln would be ashamed. This is not what the forefathers invisioned. Perhaps it is time we become the forebearers and make this nation great for all that live here so that we can pass along the bounty to those who do not- for a country without foundation does not have a place to stand either against it's foes or next to it's friends.

One of my dear friends just had her second baby. Or as we call it in our house, back up #1. I remember when I had my second baby. We had no money, my husband was never home, and all I wanted was to sleep through the night. 10 years later, we have money- but it's all spoken for, my husband is rarely home and for the love of all that is holy- is 8 hours of uninterrupted sleep too much to ask for? 7 would be fabulous. I would settle for 6 and this week- would probably feel refreshed with 5. Let's face it- work quality suffers with inadequate rest time, and as anyone can tell from the rag a muffins running around my abode- quality has indeed suffered.

When we used the slogan "we put the fun in dysfunctional" - I'm pretty sure it was in reference to the family dynamic- not serial organ malfunctions. Yet here I am with one kid who has no adrenals, another whose pancreas has decided to abandon ship, one who thinks she is the family pet and one who thinks if she pretends to be in another family long enough, they might actually keep her. Care and feeding of said creatures is a challenge on good days. Now it has taken on a life of its own.

I hate diets. I'm not a fan of working out. I figure all these added pounds will give me a leg up someday if I have to go through chemo. I haven't dieted since I was 18. I have tried more diets than I care to admit, and there is something seriously wrong with the fact that they were all before I was 18. My dad was a big man. From what I can tell, I got my athletic side from him. And my love of food. I know what reasonable portions are- but really they are just so reasonably small. I like to cook. I'm not a great baker- baking requires a precision that I am not comfortable with. When I cook- it's all about how it tastes-I'm a pinch of this and a dash of that kinda girl. I hate recipe exchanges- I actually made one up once. A friend called and said you didn't really mean so much of this did you? Sure I did- if it doesn't taste right- add a whole bunch more of all the other ingredients and it will be just fine. Now I just pass along whatever Betty Crocker recommends. I'm one step away from being poetic and submitting recipes for serenity but I seem to be lacking some key ingredients.

One of the approaches to type 1 diabetes management is carb counting. In theory, it is pretty straight forward. Except for the fact that IT IS KILLING ME. They even gave us the uber scale of justice. It has more functions than my phone and I'm pretty much afraid to touch anything but the power and zero buttons. Thank god I have a scientific degree of some sort or I may not have known what the zero button was for. We also got the complete set of measuring utensiles. The darn things could have their own zip code. Really if you have a 1 cup and a 1/2 cup- do you need a 1 and 1/2 cup and a 2 cup measurer? I do like that the little spoons actually have dash and pinch measurements on them- so now I can say I'm a 1/8 teaspoon and a 1/16 teaspoon kinda girl.

So the first couple days of diabetic cooking, I tried to familiarize myself with the calorie king carb counting handbook. Basically if we were eating anything processed, packaged or from a well known restaurant- it is easy to find in the book. Well newsflash kiddies- if it's processed or packaged- it's got the carb count on it. And that's not the stuff we really need to be eating anyhow. It's the tricky stuff I need help with- like cocktail sauce that comes with the Costco shrimp(24g per 1/4 cup btw) or our neighbor's birthday cake(guess and guess again). I also learned how unlikely it is for eateries to actually have nutritional information on hand. Mcdonald's has the carbs written right there on the wrappers. I was surprised how hard it is to obtain carb counts considering how big the low carb/no carb diets were a few years ago. I am starting to get why all those health food nuts are so ornery. It's a pain.

So night 1, I make meatloaf, mashed potaotes and carrots. A fairly high carb meal- but the plan is to match the insulin dose to the actual carbs moreso than restrict diet. That is what we call management. SO I measure. I weigh. I calculate. I go online and double check the nutrition facts.The kids want to know why I have tears, I blame the onions. This is soo not me. I can do this. Except 2 hours later, and we take lil man's sugars and they are high. Grrrr. What's the point of spending all the time measuring and being precise when the result is anything but? Then tonight was our neighbor's birthday and we were invited over for cake and ice cream. I tried to balance that with a lighter dinner of shrimp and salad. The cake and ice cream comes out to be like a days worth of carbs. But the point is to not restrict him so he doesn't feel the need to sneak later. He is all impressed that his dinner is under a unit's worth of carbs and I inform him that that is good because the cake is going to knock it out of the water. He starts laughing hysterically. Sleep is a beautiful thing- if you get it- please cherish it- if you don't need it- please give me your number, I have 4 mutants I'd like to introduce you to. Somewhere between a fish out of water and out of the ballpark morphs our new catchphrase.

Needless to say I was very surprised 2 hours post cake when Phillip came to me and said he was feeling low. That's not what I was thinking when I thought he was going to knock it out of the water. But he was low and got a snack. He angled for more cake and ice cream- but settled for goldfish. I'm not entirely sure but I think there is irony somewhere in all of this. That or I am actually capable of counting carbs. Nah.

Wednesday, April 6, 2011

A few days ago, I sat by as all 3 pediatric endocrinologists bantered on about how fascinating it was to see a pancreas just disappear. Yeah flipping frig frog HIGH larious. I guess I'm a little less fascinated being the owner of the new 24 hour ops world of confusion regarding blood sugar, ketones and insulin due to aforementioned vanishing pancreas. It does however give me a fascinating appreciation for the human body and how it manages to keep running after all the torture we put it through. I had just about shut out the banter when one doc turns to me like a kid with a new toy- wanna see it? Um, yeah.

There it is. Now it's gone. See, here is the pancreas slightly post trauma- somewhere Mayish 2008- the doc points to the screen. I look at the MRCP(MRi with Contrast of the Pancreas) and am fascinated at the clear resolution of my son's pancreas. It looks just like all the artistic renderings in the books of knowledge I was trying to cram into my nugget. The only thing off is the pancreatic duct, which was still obviously dilated- or dilatated as the docs say- don't ask me why- probably some goof ball who likes to make up new words- I don't know anyone like that. To me the pancreas looks like a chicken tenderloin- a nice round head that tapers to a point. He pulls up the MRi from last week. It is gone. All you see is some vein and he points to a bit of the head that is still hanging on. It's creepy. I guess in some circles it is fascinating- it's too soon, too soon.

It occurs to me how different each of the endocrinologists is. The senior doc was the one who tended to Phillip on the ward as we were introduced to the finer elements of diabetic treatment. We talked for hours about how fascinating the case was- and by we, I mean he. In his mind, Phillip is a fascinating case study of why- but the treatment is still standard. Everytime I tried to ask a question or offer input, he switched topics or talked right over me. Although knowledgeable and friendly, I can't say I was disappointed to find his retirement was less than a month away. The other endocrinologist we have met a couple times and is very upbeat with a booming voice and comes highly reccommended by staff and patients. He is a bit more proactive with treatments. Our endocrinologist is soft spoken and knowledgeable. She is one of those docs that you wonder how exactly fits all of that information in her head. She has a good bedside manner and you definitely feel like she is taking her time and is thorough. As I get to learn more and more about the field of endocrinology, I realize what a special brand of doctor this is and what a complicated field it is. That and it deals with way too much chemistry and biochemistry for my liking. They deal with what we all intuitively know- hormones are some whacky shit.

I really like our endocrinologist. She takes her time to listen and process what I tell her and takes into consideration the emotional and non quantifiable issues I have with my kids' treatment. We met her 3 years ago because Phillip busted his pancreas, we came to know her through Lily's adrenal insufficiency and now we are going to get to see a lot more of her. This is the part where it becomes important that both my kids and I are comfortable with her. I know that it may take 10-20 minutes waiting in the waiting room for our appointment. I also know that she will stay with us until we feel comfortable with the visit. She commands her own schedule- which obviously drives the front desk staff nuts- but I like knowing she knows when and who she is seeing. Every visit, she takes the kids to get an accurate height and weight on her special scale majiggy. It didn't surprise me that the scale was located in a closet across from the exam room, it made sense. Especially since there is such a premium on square footage. There were tons of pharmaceutical and diabetes related care packages and piles and piles and piles of books. It did however surprise me when she kept referring to it as her office. At first I laughed at the joke- like when the kids have a questionable potty issue and I usher them into- my office. Or when I am sleeping and they have a bad dream- again, they get to enter- my office. I actually appreciated the dry sense of humor. Until about 6 visits in, when I realized that we were actually in -her office. On careful examination- the piles of books were not uniform- there were some on a chair, which was actually in front of a desk- also completely covered in books and files, next to a book case which was almost totally obscured. Some might run out of there in terror- not me. I liked her even more. She's human. And obviously reads, a lot. I like a good bedside manner, but I don't need her to hold my hand- I have a support system for that. I like that she takes my well being into account- a sane mommy is needed in the partnership , but I need her for her extensive knowledge on causes and treatments for the diseases my kids have. And I know for sure if I ask a question she can't answer( there's only been 1 so far) she definitely has the resources to find it. And she did- somewhere in her office.

Monday, April 4, 2011

A little over 6 months ago, I went through the rigamarole of trying to get Lily's life saving medications allowed at school. Since there is no precedent, no previous case of adrenal insufficiency- hydrocortisone is not on the formulary. It took weeks of phone calls, meetings, research and canoodling to get her meds in the health room. Even then it was strictly stipulated that although her shot could be kept there- legally there was no one there who could use it. yay.

A few months into it- I kept getting calls from a new health aide at school. She had Lily's number and wasn't afraid to use it. I would hop in and assess the crisis. By the 3rd call, I felt perfectly comfortable letting her give me assessments via phone of Lily's condition which could aptly be summed up as "attention seeking". She told me that she had daily visits with Lily, but unless she had the symptoms I told her to watch for, she usually sent her back to class. Finally, someone who knows what they are doing. For every door closed, there is a window- and Ms. Stacey lets the sunshine in to an otherwise crappy situation. Most of all it's nice to feel comfortable with the person who is the liaison between your child's health at school and the school. She knows the rules, she identifies that many of them lack common sense, and she always considers the childs needs. I like that. I call it common sense. There's an idea.

I am not the type of parent who gets all weepy on the first day of school. I love my kids. I miss them when they are gone, but school is a normal progression. I know parents get stressed about the what ifs and their children's welfare at school. And they have normal kids. without life threatening conditions. Even after I got Lily situated- I worried she would get sick, but I felt comfortable she would bring up any needs she had and demand to call me. This morning was so hectic, I had but a moment to pause and contemplate the irony that I packed 2 emergency care boxes- one for Phillip's classroom, one for the healthroom-and promply shoved them inside a Big Island candy bag to transport to school. I don't know- I guess I could have used the Baskin Robins bag. I was slightly surprised then today when I paused after a 20 minute brief with Phillip's teacher and another 20 minutes with Stacey and 10 minutes with his counselor- the sheer panic I felt walking to my car. The what ifs decended on my chest and started pecking away like a hoarde of hungry birds. So this is what it's like. I do not like this at all. I know it will get better. We have already settled into a routine.But this is pretty stifling.

I sit and marvel that I had all the information on Lily's condition- I felt comfortable and was ready to educate the school with a clear matrix of possibilities and solutions- and it took so long to get it all in place as a patch job to make sure I was comfortable with the school's accomodations. Phillip has been diagnosed for a week- I take him into school and because of an IDEA(Individuals with Disabilities Education Act)- every one does everything to accomodate us. This means that he should not be discriminated against because his pancreas doesn't look or work like other kids'. It means that his life saving medicines can be kept at school and have to be used. It means that enough kids and their parents have continuously butted their heads against the same walls I did with Lily- that legislation was proposed. I am grateful to not have to bang my head against the wall for this reason. The irony doesn't escape me. Too bad there's not a candy bag somewhere to shove that in. I might be able to find one if I had the time to look. But for now I have to wrap up- it's time to run back into school to check on blood sugars.

Friday, April 1, 2011

A friend suggested that we needed to update lil man's title- Pancreas boy is for sidekicks- Captain Pancreas would be more fitting for a hero. I have to agree. We just went from waiting for impending doom, to managing it- therefore I now knight thee Captain Pancreas. Another friend suggested a special cape, yet when I consulted our fashion designer- she adamantly declared "NO Capes!"

Somewhere in between planning Kiera's Birthday sleepover( which somehow always coincides with some medical crisis) and learning how to manage Phillip's diabetes and Phil's next TDY- starting Saturday- I try to find the time to feel overwhelmed. The only symptom that presents is a leakage of a clear liquid from my ocular cavities during all times of calm. There are only about 2 of those a day and they last less than 5 minutes each, so I guess I am doing ok.

Captain Pancreas and I will fly into the facility today for a routine systems check. I know it will get easier and more second nature- but right now it is akin to having a baby. Get up- check sugar- count carbs in meal- administer shot- wait 15 minutes- eat. 2 hour reprieve. check sugar. repeat for every meal/snack- and end the day with different shot. His sugar levels are still high, so we will be tweaking. In between I try to coordinate what needs to be done at school via talking with his teacher and a public health nurse and check on Captain Pancreas' mental health. His coping mechanism right now is video games. He was coping really well until a particular physician tried to be peppy and explain he could still do anything he ever wanted to do, except be in the military and fly commercial planes. That was the first time I saw the light flicker in Captain Pancreas. His alter ego planned to go into the Air Force as a cover and fly jets- like his dad. Times like these I begin to wonder exactly how many times ones heart can break before it goes numb- right now some numb would be welcomed- just for a little while.

I know everything happens for a reason. I know he has more gifts than we even realize. I have no doubt he will do great things and make a vast difference in many people's lives. He already has in ours. It hurts to see your child's dream crushed. And not in the- no you can't play in the playground or no we don't want you to play with us kind of way. We are talking dreams and ambitions and hopes for just blending in or taking flight. I know all of it will be rectified in time, but for this time- it breaks my heart.

So when a 350 lb chairbound man at the park tried to commiserate that he too has diabetes- I send my child off to play and tune out the drithering because you can't compare living a shitty lifestyle for 50 some years catching up to you -to a child's diagnosis. Phillip's diabetes won't reverse if he eats right and gets some exercise. It will be easier to manage and he might get to take less insulin- but he didn't get diabetes because he feasted on fried meats with a sugar sauce and 3 different sides of starches for 3 meals a day for 50 years. Yep, this is progress- I have moved on to the anger stage.

On the positive side- which is a bit cloudy and slightly obscured at the moment- for every closed door there is an open window. And sometimes to get out that window- the only way is to fly and I have no doubt at all that Captain Pancreas has the wings to do it.